Shayne Higson s Speech at the DWDnsw A.G.M. 5 April They are just not listening. We need a voice!

Transcription

1 Shayne Higson s Speech at the DWDnsw A.G.M. 5 April 2014 They are just not listening. We need a voice! Introduction It is a pleasure to have been asked to speak today. I know that many of you have been involved with the campaign to allow medically assisted dying for decades but I am relatively new to the issue. I am sure that when the committee were looking for guest speakers for last year s AGM, my name would not have been on their list. But over the past twelve months this has become the most important challenge in my life. As you know, I am now head of the Voluntary Euthanasia Party in New South Wales and I have also been endorsed as their lead candidate for next year s state election. It is a bit bizarre really, seeing that I had never had any political ambition. So what happened to bring me to this point? Jan s Story As some of you may know, my beautiful Mum died at the end of 2012 from an aggressive brain cancer. She was a vibrant, positive person and she loved life. She accepted that there was nothing doctors could do to cure her cancer and she knew she had less than 12 months to live. But what she did expect was that her doctors would look after her in the end stages of her illness, before it gets ugly, she had said to her neurologist. But this did not happen, and like so many others, I now know, she was forced to endure a traumatic and undignified end to what had been a wonderful life. Just 15 days before she died, Mum pleaded with everyone to end her suffering; our GP, the palliative care team and, of course, her partner Rod and my sisters and I. But there was nothing any of us could do. One of the excuses that opponents give, as a reason for not supporting law reform, is that if patients have access to good palliative care, they won t need to ask for a medically assisted death. This may be true for some patients but not all. Our family took care of Mum at home and we were supported by a community, palliative care team attached to a top Sydney hospital. But when Mum reached the end stages of the brain cancer, we were told the only way she could achieve the peaceful end that she wanted, would be to be admitted to a hospice. Right from the beginning Mum had said she did not want to go into a hospice and we had promised her that she would not have to. I also promised, that I would be with her until the end and I would not let her suffer. But with no other alternative, we felt we had no choice. Rather than a hospice, Mum was taken to a Private Hospital. Fortunately, the staff were lovely and they allowed my younger sister and I and Rod to stay in the hospital with her.

2 I did not know what it was called at the time, but now I know that what they were able to provide, in the hospital, was terminal sedation. The fact that there is this option, available to some patients, is another reason given for not supporting medically assisted dying but again, I can say from Mum s experience, that it is not a peaceful or dignified way to die. It took five days and during that time Mum had a massive seizure and suffered pain and other distress. It was during those five, long days that I wrote down everything that was happening to Mum. I sat on my mattress on the floor, just before dawn each day and I just wrote. I was so distraught. I could not believe what was happening and I knew right then, that when it was all over, I would do everything I could to change the law. Mum died on the 27 th November Campaigning for Rights of the Terminally Ill Bill A few months later I heard on the radio that Cate Faehrmann would be introducing the Rights of the Terminally Ill Bill into the NSW Upper House. I wanted to help, so I rang her office and, after speaking to a staff member, Jan s Story became number 248 out of the 500 personal stories that were sent to all the MPs in the NSW Parliament. Shortly after that, I was asked to take part in a short video produced by DWDnsw that would also be shown to MPs. Then, on the day the bill was introduced, I appeared in a television report on the ABC s evening news. I remember feeling, around that time, that it was all meant to be. This was the reason why Mum had suffered such an awful end and why I had to witness it all. I really felt that I was playing a part and that we would achieve law reform in May last year. I suppose I was quite naïve, I just thought, of course, the bill would be passed, why wouldn t it be? What had happened to Mum was wrong and surely with such a well-drafted, humane bill, the lawmakers, our elected representatives, would listen to the vast majority of Australians, show compassion and change the law. But when I saw the story that night, I was so disappointed when the reporter commented at the end that there was little chance that the bill would be passed. Over the next few weeks I devoted nearly all my time to ing and phoning politicians. I called talkback radio for the first time in my life. I attended Parliament when the Bill was being debated and sent off more s to counter the arguments put forward by opponents. Everyone warned me that the bill would not pass but that did not prevent my disappointment on the day when it was defeated 23 votes to 13. Following that vote, Cate Faehrmann met with supporters of the bill and that was when I met someone, who is now a dear friend, Loredana Alessio-Mulhall. I am sure all of you know about Loredana and the fact that she is now at the end stages of multiple sclerosis. She was so amazing on that day and despite the defeat she just said she was not giving up. I promised on that day that I too would not give up.

3 Becoming the lead NSW Senate candidate for the newly formed VEP Within a few months another opportunity presented itself when I became the lead NSW Senate candidate for the newly formed Voluntary Euthanasia Party. I wasn t exactly sure what would be expected of me but one thing I did know was that I was willing to devote 100% of my time to that federal campaign and that is what I did. With no staff, I basically had to run my own campaign but with moral support and guidance from members of DWD such as Richard Mills, Sarah Edelman, Gabrielle Brown, Jill Weekes, David Leaf and others, as well as Loredana, I managed to learn a lot within a very short time. It was sort of a crash course in the history of voluntary euthanasia. But I think what gave me strength, and confidence, to speak to anyone about this issue, was that I had my personal experience. No one will ever convince me that the way my Mum died was compassionate, humane or dignified. Terminal sedation in the end was not peaceful, Mum did suffer and the staff were clearly scared of hastening her death. It is just not acceptable. I know I am not the first one to say it, but we can do so much better than that. During the seven weeks leading up to the federal election in September I worked non-stop. We needed two candidates to run as a party above the line and so I was very pleased when Loredana agreed to be the second candidate for NSW. In the end, with the help of some wonderful Election Day volunteers, we managed to achieve nearly 15,000 primary votes, which was not too bad for such a new, micro party. But we still didn t have law reform, so the journey continued. Registering the VEP in NSW During the federal campaign a man named Barry Shine contacted me when he made a donation. He told me that he was a retired businessman who had a lot of experience with fundraising and he would be happy to meet with me after the election to discuss future strategies for the VEP. I met Barry and told him that I intended to pursue the registration of the Voluntary Euthanasia Party in NSW and he agreed to help me. With the support of the VEP s federal executive and once again members on the DWD committee, we established a Foundation Executive Committee and started the process of registration. As you know, because all of you would have received a letter last November, we needed 750 members in NSW and we had only a few months to complete the registration process. I have to say we were absolutely thrilled by the response. So many of you joined the VEP, by early December we had just under 1100 Declarations to submit to the NSW Electoral Commission. I am happy to report we now have over 1500 members in NSW. As you now know, registration was completed in mid February, so we will be contesting the next NSW State Election on 28 th March 2015.

4 So where to from here? I am very excited about the challenge that lies ahead over next 12 months. For the first time in NSW, voters can show their elected representatives that they are not happy that they continually ignore moves to introduce laws to allow medically assisted dying. One of the most disappointing aspects of last year s defeat of the Rights of the Terminally Ill Bill was that even an amendment that would have sent the bill to a cross-party committee was defeated. We know there are at least some members of the Liberal and National Parties who support medically assisted dying, yet not a single one of them voted for that bill or the amendment. One Liberal MLC actually told me that he did support the issue but that there was no way he was going to let that woman, (meaning Cate Faehrmann), get all the credit and help her get to Canberra. You can imagine how upset I was, hearing that the only reason he would not support the bill was because it was introduced by the Greens. I was disgusted, just as I am sure all those who lobbied so hard in Tasmania must have been disgusted, when again, not a single Liberal member of the Tasmanian Parliament supported their Voluntary Assisted Dying Bill late last year. And it came so close; just one vote would have made the difference in Tasmania. Our biggest challenge You might have seen the open letter that Marshall Perron wrote to the Liberal leader, Will Hodgman, who is now the Premier of Tasmania. In it he said: You commenced with an attempt to convince the audience that Liberal Party members were allowed a conscience vote on the Bill. You know, and I know, that was a lie. We both know how power operates in political parties. You will recall telling me "the Liberal Party is a broad church" during our meeting on this issue. It seems odd then, that 100% of your members genuinely hold a view contrary to one shared by 85% of the population. It is statistically improbable. I think most of us here would agree with Marshall Perron, it is statistically improbable and I think this is our biggest challenge. We need to convince Liberal and National MP s around Australia, that they will not lose votes if they support this issue. What we need them to realise, is that they will lose votes if they don t. You are probably all familiar with results of the 2012 Newspoll that revealed 82% of Liberal/National voters, 84% of Labor voters and 88% of Greens voters supported the right to medically assisted dying. But what that poll also revealed is that voluntary euthanasia is a vote-changer, with 29 per cent stating they would vote against their usual political candidate if he or she did not represent their own position on this issue. So this is certainly something I would like to encourage everyone to do in the lead up to the 2015 election. Contact the local candidate who you are intending to vote for, be they Liberal, Labor, National, Greens, Independent or other and ask them their position on medically assisted dying.

5 If they won t support it, tell them you will be changing your vote until they change their position. It doesn t have to be forever, just until we achieve law reform. Let s make 2015 the election that sends the strongest message. As Marshall Perron pointed out, we are not asking these politicians to lead on this issue, we are asking them to catch up with the needs and wishes of their constituents. The Voluntary Euthanasia Party is unlikely to be standing candidates in any lower house seats, however I am sure that if your preferred candidate does not support voluntary euthanasia you could find an alternative, amongst those on offer, who does. Even if you cannot bring yourself to change who you vote for in the lower house, even when they oppose voluntary euthanasia, perhaps you could tell that candidate, or their staff member, that you will not be supporting their party in the upper house and intend to vote for the Voluntary Euthanasia Party. One significant difference between last year s Senate election and the upcoming state election is that the method of voting is very different. The method of voting for the NSW Legislative Council is optional preferential which allows you to vote for one or more parties and most importantly, to direct your own preferences. The major parties will often try to discourage voters from voting for single issue, minor parties, saying that your vote will end up with a party not of your choosing. This can t happen in the NSW election for upper house seats. By voting 1 for the VEP you will ensure that we have the best possible chance of representing you in the NSW Parliament but after that you can choose to direct your second preference to any other party of your choice. This is one of the most important things to convey to others if you want to encourage them to vote for the Voluntary Euthanasia Party. It is a pity that we have to highlight this failing of the Liberal and National Parties but unfortunately the reality of the situation is, that unless we can convince, even a small number of Coalition MP s to support law reform, we will be waiting for possibly another decade or two before we see change. We are electing people who don t actually represent what we think. There was an interesting panel discussion held at the Perth Writers Festival a few weeks ago that some of you might have seen on the ABC s Big Ideas program; it was titled A Good Death. During that discussion Dennis Altman said that he found it particularly odd in an era when we have a government that constantly tells us about their mandate, they have no compunction

6 whatsoever in ignoring what is a very clear expression of public opinion. The host, Ann Summer, agreed saying, We are electing people who don t actually represent what we think. Dennis went on to say, Our legislatures are becoming more socially conservative as the population is becoming generally less socially conservative and that gap is widening. I am afraid I think they are right. I know this is primarily a state issue but we all know that the current federal government has a huge influence on the states. I believe we should also be encouraging Tony Abbott to stand by what he said on ABC s Kitchen Cabinet program last year. In that interview he said: Faith has certainly helped to shape my life but it doesn t in any way determine my politics. He went on to say: You have to accept that there are all sorts of private views that can be passionately held but in a pluralist democracy, such as ours, the idea that you can somehow make those private views mandatory is bizarre, just bizarre. This is why I think that it is essential that someone of faith understand that while faith is a splendid thing in private life, it can often be quite a misleading guide in public life. Tony Abbott said on the ABC s Kitchen Cabinet on 4/9/13 We should not wait Bernard Salt, a social commenter, said last year, during the federal campaign, that he believes voluntary euthanasia laws will be achieved in the 2020 s or 2030 s because this issue will be championed by the baby boomers. Well, I am a baby boomer and I am not willing to wait for the 2020 s or 2030 s. The VEP State Foundation Executive Committee So now you know why I feel so strongly and I sincerely hope that you will help make voluntary euthanasia the main issue in next year s state election. Please feel free to take as many brochures as you think you can distribute to family, friends, neighbours or colleagues. We need to get our message across. Before I finish I would just like to introduce the other members of the VEP State Foundation Executive. My deputy-convenor is Barry Shine, our State Treasurer is Dee Johnson and our State Secretary is Gideon Cordover. The fifth member of our committee is Dr David Leaf. Please feel free to talk to me, or any of the committee members, after this meeting. We would love to hear your thoughts on the issue of voluntary euthanasia, how we can best achieve legislative change and most importantly campaign strategy.